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Saturday, December 31, 2011

STM and I celebrate 20 years of wedded bliss today. Twenty. Years. That's a lot, don't you think? Feels like it to us, too. And that's why we went to Hawaii, because it is a lot. We're proud of ourselves, and without over-sharing, I'll just say, we should be.

Without a doubt, one of the best moves we ever made, was going through RCIA together, with Kathleen and her husband Jerry as our sponsors, and then joining the Church. It's not because it's Catholic. It's not because it's Christian. It's because it's an active, vital, loving, supportive community, right in our own backyard. It's our Cheers - a place where everyone knows our name, knows our story, loves and accepts us and supports us on our journey.

Say what you want about the Catholics (and I've said it all, and some of it I continue to say, so go ahead), but they revere marriage, and I think that's a good thing. There is much to support the institution inherent in the Church - again, a good thing. STM and I decided to milk some of that goodness yesterday, when we received a blessing from our priest, following the daily morning Mass. We had wanted to mark our 20th in some spiritual way, and asked the priest if he'd perform a blessing. We found a day that worked for everyone, and STM and I went to 8:00 AM Mass yesterday, surrounded by the holy elders, and basked in their goodness and wisdom. After they all cleared out, three of our favorite humans, all of whom happen to work at the Parish Center, stayed behind. Because they know of my love for Mary, we moved over to a beautiful statue of her, prayer candles aflame below her feet, and the priest performed a beautiful blessing, complete with a "You may kiss the bride," at the end.

The blessing came straight from the Book of Blessings, and it used the word "fidelity" several times. Both STM and I noticed, and talked about it later. Kathleen and I even dissected the word on our walk later that day. "Of course we have fidelity," I said, "we certainly don't have infidelity!" But I realized even as I was boasting, that just because we don't have that kind of infidelity, doesn't mean we both can't clean up our acts. Merriam-Webster defines fidelity as the quality or state of being faithful. Faithful - full of faith.

Isn't that, indeed, what a marriage needs to survive? Doesn't it need to be full of faith? Faith in each other? Faith in ourselves? And faith in something greater than ourselves?

Thursday, December 29, 2011

Lately, after I get Rojo to bed, I either make myself a hot cup of this:

Or a big, round glass of this:

Light a whole bunch of these:

Throw something called an achy bakey in the microwave for three minutes, take out the fabric bag holding lavender scented seeds and place it on my leg that gives me fits, then watch a couple three of these:

I had always seen commercials for "Brothers and Sisters" but never watched it. Now I'm catching up, one delicious episode after another after another after another. At this rate I'll be through Season One by New Years!

Wednesday, December 28, 2011

We have nicknamed Rojo Joy Boy. The boy just exudes (loudly) joy, pretty much 24/7. At times when I'm ready to strangle him due to the excessive (loud) joy, I remember that many a mom would give her right arm to have a child that is not only happy, but as I say, joyful (and loud). Moms that have never heard their children speak, never heard them laugh, sing, give glory to God in the highest while YouTubing church songs. None of that.

This is Joy Boy's favorite song in the whole entire world. Know any other fifteen year old boys that go around with their hands in the air and a smile a mile long, singing alleluia?

Tuesday, December 27, 2011

I am on a reading frenzy, frenzy, I tell you. I can (and do) go months without finishing a single book, then every now and then I just can't stop. I have a stack of books as long as my arm of unread books by my bed, and am determined to get through the stack before I allow myself to even consider buying a new book.

I sat down with I Am in Here a couple days before Christmas, and despite the fact it was a couple days before CHRISTMAS, still managed to read the whole thing in less than 24 hours. I Am in Here is not just another autism book. I've had it up to here with your standard mom-of-a-kid-with-autism book. I've lived it, I don't need to live it all again in my free time.

Virginia Breen is the author, her daughter, Elizabeth co-authors the book. Elizabeth is unable to speak, but writes beautiful poetry that allows everyone reading the book to see into her mind, and by extension, have greater understanding of perhaps others that cannot speak. The book has a very Helen Keller feel to it, complete with Elizabeth's own Anne Sullivan.

What I liked best about the book was the spiritual component, it delivered it perfectly, without hitting you over the head with it. Virginia, like me, believes these kids are here to teach, they are deeply spiritual, wise, and enlightened beings here to help evolve us all to a higher place. I felt this book conveyed that with just the right touch.

To order your copy, or ready more about Virginia and her daughter Elizabeth, go here.

Thursday, December 22, 2011

Rojo is super excited for Santa to come Saturday night, we've been counting down since the minute we put away the Halloween decorations. For the last few rounds of birthdays Rojo has been grabbing one of his beloved "friends" from the top bunk, shoving it into a gift bag, letting the recipient open it, "have" it for some specified amount of time (usually a couple of hours), then asking that they return it.

This year he's decided to take the giving idea and apply it to Christmas, too. He dragged me to Bi-Mart in late November to buy a gift for Elmo. "Elmo wants gummy bears for Christmas." We headed to the Christmas candy aisle and he decided to do all his shopping in that very spot. Within five minutes we'd covered his aunt, Papa, Grandma, Grammy, Woohoo, and STM. He nagged and nagged until I wrapped them, and they were amongst the first packages under our tree.

Yesterday STM called Rojo and asked, "Do you have a present for Mom, or do you need me to take you shopping?"

"No, I've got it, STM, I have Care's present all ready."

Hung up the phone and turned to me, "Care, will you help me wrap your present? But you can't look. You need to be surprised."

I found a big box, he ran upstairs and grabbed the three friends while I held the box open, eyes closed, then he put the lid back on. We went down to the ping pong table in the basement and wrapped it together.

To: Care
From: Rojo

We tied a green ribbon around the red and white polka dot paper, and put it under the tree.

Then the relentless quest to pin down the exact moment I would open it, began, with a fervor. With some amount of doing I managed to put him off for almost 24-hours, agreeing to open it today when Kathleen came by for our annual three-way gift exchange.

Minute that poor woman sat down (before she even got to taste the coffee or eggnog he insisted we have ready for her), he had me opening the gift.

"Never trust the box," he said as I peeled back the paper to reveal a box that said gala apples. When I pulled out friends 1, 2 and 3 nobody was more tickled than he. I think he thought I was genuinely surprised. I think he thought he'd really pulled a major gift-giving coup. I think he thought right.

Friday, December 16, 2011

Bear in mind I have "started" (been in on the ground level, really, didn't technically start), exactly one. This is not a manual, but a what-worked-for-us list.

If you are the parent of a special needs child, you need support. Period. You also need resources and a good group will do both - offer resources and support!

1. Find 2-3 other people that also have a kid with special needs, even if they aren't the same as your kid's. You know 2-3 more. You just do. If not, ask your doctor, therapist, kid's teacher/principal/counselor, you-name-it.

2. Meet. Could be a coffee shop (don't recommend that - the walls have ears). Could be one person's house every time (I actually DO recommend this, and I'll tell you why in a minute). Could trade off houses. Pick a time that works for the initial group of people, and stick to that. Others will join the group and suggest times that would better work for them. This is a no-win. You will forever be rearranging your meetings, frustrating everyone, losing consistency, and never finding a perfect time. Don't apologize. "We meet ________ from ________ to ___________." I do tell people that it's fine (and common) that people come late and/or leave early, whatever they need to do.

3. Key is to meet when the kids aren't around. We meed the 2nd Friday of every month, 9-12 AM. Many of the moms do work. They arrange their schedules around this. I recognize this is not always possible, but you would be impressed with the lengths some of the women in our group go to. We (I) put out the schedule for the whole school year by September 1st, they block that time out and show up.

4. Establish a strict what-is-said-in-the-room-stays-in-the-room, policy. This is key. If people feel like they can't be free to share, there is no point in having a group. I always e-mail a summary of our meetings and distribute it to the whole group, but never put on there anything personal or specific, just Websites, resources, etc. that were shared at the meeting, maybe even a question that someone in the group that wasn't there, could still answer.

5. You kind of need one person to take charge, have all the information filter through, and keep everyone on track. A leader will rise. It may or may not be the person that gets the group going.

6. Take an All Are Welcome approach. If someone comes to the group and wants to bring a friend/neighbor/relative/whatever the next time, always say yes. You can't control the size or formation of the group - this is organic and will take care of itself.

7. Some people will come once, dump all their problems on you, and never return. This is not unusual. Likewise, some people will come many times before opening their mouths to speak. This is also not un usual, and is to be encouraged. They are feeling out the group, establishing trust and are sure to be invaluable "members" of the group.

8. Sometimes have a topic and/or guest speaker, sometimes do not. I have found if we are too loosey goosey, or too all-business, it doesn't work.

9. Each time a new person joins, do NOT go around the room and have everyone tell their whole story again. This will chew up ALL your time and the ones that are faithful and loyal and never miss, have to hear it over and over again. People will catch on. It doesn't matter anyway. You don't need the full story to be a strong support.

10. We have considered, and even tried to start, sub-groups. ADD/ADHD, ASD, Down Syndrome, whatever you may have a lot of people coming for support for. We've never been able to get this off the ground for whatever reason. There is something nice about the group that is "misc." Many of the people in our group ALSO attend specific group meetings, but they always like our group better. It can be pretty depressing when the whole meeting is about the same "different ability" - you hear the extremes and that can overwhelm and freak some people out.

11. Keep the e-mail list blind copied. I JUST started doing this and wish I'd done it years ago. Not everyone needs to see a new name on the list and start to speculate what all is going on in THAT family! If they want to know who else is in the group, they are welcome to come to the meetings.

12. I have found that it is more successful to just have all the meetings at my house every month. I make coffee and move the furniture around, someone almost always offers to bring treats, and if they don't, I open a bag of whatever is in the pantry and call it good. Some people that need the group most, are barely holding it together. If they think that eventually the group will need to meet at THEIR house, they may not even bother joining the group. Just like a natural leader will emerge, so, too, will someone that likes to host things at their house. Trust that this is true. Again, you could always meet somewhere where nobody is the host, but I think it's hard to talk about such personal issues, in a public place.

13. We have twice as many names on the email list, as typically come to a meeting. That does not mean they aren't valuable and contributing. People have posed all kinds of questions to the group, all the way from, "Do you know of a good math tutor?" to "What experiences have you had with Risperdal?" The e-mail responses are helpful and varied.

14. Have someone in the group be the recorder at the meetings (again, this could all be the same person that hosts and organizes, and communicates, but doesn't necessarily need to be). Keep track of all the great resources shared, and create a directory. It took me 7 years to figure that one out. Each time someone needed a good something-or-other, I was forever going back to the group to ask, AGAIN. We now have a many page document with names of acupuncturists, doctors, therapists, books, speech paths, Websites, etc.

15. Try to keep the support on special needs. Invariably "life" will hit people in the group - death, divorce, foreclosure, health issues, all of that. While it's inevitable some of the discussions will also include all that's going on in a family, the group is really gathered for one very specific reason, and needs to stay focused on that.

16. Don't meet in July or August because A) Your kids are home, B) Everyone's schedule is different, and C) It's good to have a break.

Wednesday, December 14, 2011

Sorry for the lack of posting, just a little thing like CHRISTMAS keeping me from the computer these days. Shop, shop, shop, wrap, wrap, wrap! Was lucky enough to be given a pass to the Nike Employee Store (thanks, Janell!) and went there today to get the last few things I needed. For. Myself. Yes, I am fully shopping for myself this year, too. Really excited about the Mary necklace I bought myself from my friend Candace - the incredible artist/jeweler/Mary lover that she is. Really excited about the cute rain jacket I got at Nike today (not that anyone in Portland, Oregon needs a rain jacket or anything). Really excited about the new dish towels I got. TWO packs. Yep. Come Christmas day at least six of the nasty old ones in the drawer are getting shit canned. I have stacked all my gifts on the ping pong table in the basement with just a little Post-it that says, "To: Mom, From: ?" I'm going to get Woohoo to wrap them all up - no gift bags, either, I want boxes, ribbon and BOWS!

On another note, I think I've failed to tell you all about Rojo's full on addiction to frozen yogurt! You can blame Nancy. She could hardly stand his 3-a-day snow cone habit this summer, full of nothing but sugar and empty calories. She persuaded him to try frozen yogurt, and now, many $$ a week later, I'd say she was successful! Nancy is Rojo's favorite guest to invite to join us, and because she's a trooper, goes at least a couple times a week with us.

Rojo goes through the self-serve section in record breaking time, making a "graveyard" of sorts, with at least a smidge of every flavor offered. Then I sprinkle graham cracker crumbles, Oreo crumbles and 2 gummy worms on top (per his request). Times two. he eats both giant bowls before I finish my modest-sized bowl. It doesn't matter if the temperature outside is 34 degrees. It doesn't matter if we're the only ones in the place, it doesn't matter if dinner is right around the corner, if Rojo had his way, he'd go to the frozen yogurt place every single day and twice on Sundays.

I know Rojo's diet is terrible. Believe me, I know. But every year we inch it towards something "better." I don't have any aspiration of it being "healthy," just "less toxic" would be nice. At least the yogurt has some health benefits which I'm hanging my hat on. It's all relative.

Good for your bones:

An excellent source of calcium: (Based on 2 servings -8 fl oz) Adequate calcium as part of a healthful diet may reduce the risk of osteoporosis

Good for your tummy:

Helps maintain a healthy digestive tract

Increased digestibility for individuals with lactose intolerance

Supports wellness:

Helps maintain general digestive health and body immunity

Low Sodium: Diets low in sodium may reduce the risk of high blood pressure, a disease associated with many factors

Promotes a healthy lifestyle:

Packed probiotics to promote a healthy immune and digestive system

Low Cholesterol

Low Sodium

Other great things about YoCream Frozen yogurts:

All YoCream frozen yogurts are certified by the National Yogurt Association and proudly display the Live & Active Cultures Seal

Saturday, December 10, 2011

I "run" a support group called the Amazing Graces. I didn't name us, the founder of the group did. She felt that it took a certain level of grace to mother these kids, and that the kids themselves were amazing. She had a need for support as she was raising a child with medical issues, and didn't feel that her friends with typicals could really understand or hold all that that entailed, so she went in search of those that did. Enter me. Sometimes it's great having a child that obviously is atypical, it makes me approachable to others feeling like they're the only one.

Our group started with four people: the founder with a child with medical needs, two moms with kids that had mental health-related issues, and me. Eventually the founder moved out of the state and I took the reins. We now have an e-mail distribution list of almost 50, and generally have 12-15 people at our monthly meetings. Of those 12-15 we have our 10 or so "core members," ones that come month after month after month, a few that come now and then, and almost always, someone new. We are all word of mouth and we now cover a wide range of different abilities, ASD, ADHD, mental illnesses, seizure disorders, cerebral palsy, Down syndrome, you name it. I've lost track, but I think this is about our 7th or 8th year of being together.

One thing that has been coming up lately is the need for more support for the dads. We thought having a Christmas party might be a good ice breaker, get a bunch of the dads all in the same room, and just see if a men's group could evolve from that. By men's group I mean, going out for a few beers at the pub up the street. So, last night we had our party. It was awesome. We had people in their 30s, 40s, 50s, 60s, and 70s. We had those born and raised in this very neighborhood and those born in foreign lands. We had nurses, doctors and attorneys, flight attendants, teachers, receptionists and self-employed entrepreneurs. We had plenty of those that once worked outside the home until the day our child's needs became so great, that was no longer an option. We had those with one child and those with four. The one thing we all had in common, was at least one child with special needs (many have more than one).

STM said it was the best party he's ever been too - couldn't stop talking about what a great group of people. Many of the conversations did revolve around our children, but many did not. There were a lot of laughs and a couple teary eyes. There were exchanges of information, words of encouragement, and much, much grace.

Thursday, December 8, 2011

Today, December 8th, is the Feast Day of the Immaculate Conception, that is to say, Mary, at the moment of her conception, was and remained so, free of original sin. Whether or not you believe that to be true, I think we can all believe that Mary was one special mom. Even if you don't believe her son was the savior, he was, nonetheless, remarkable. I think we can also all agree that what this world needs most, is the presence and healing of a mother's love.

Hail Mary,
Full of Grace,
The Lord is with thee.
Blessed art thou among women,
and blessed is the fruit
of they womb, Jesus.
Holy Mary,
Mother of God,
pray for us sinners now,
and at the hour of our death.

Tuesday, December 6, 2011

First of all, I feel it's important to mention that I'm actually living my ideal life. All I ever dreamed of doing was being a wife and a mother, and being able to stay home and take care of the needs of my family. I used to think I'd get a job being a hotel maid, because there are few things in life that bring me more pleasure, than making a mess tidy. So, for me, an unexciting day of taking care of house and home, suits me just right. In fact, I was born for it. Which brings me to my next stream-of-consciousness (no time for well-crafted posts).

Yesterday was our annual visit to Santa. Rojo wouldn't dream of not visiting Santa, telling him what he wants (a bear like Max but with a proper nose, remember?), taking a name off the giving tree, finding a gift for that person, having a snack in the food court, then looking at Christmas lights on the way home. STM and Woohoo find it brutal. 99.99% of the population would find it brutal. It is, in fact, brutal. Standing in line with a bunch of babies, toddlers and some kids as old as six or seven, then us. Rojo is now 5'7 and fifteen.

Our plan is always to hit the mall early in the month, and early in the afternoon (right after school). We arrived at 3:00 yesterday, and there was a long line already formed. I took one look at the family and decided I was the only one capable of snaking around the line, and that the others must start in on the giving tree portion of the evening. We separated, I stood in line and Rojo texted me every two and a half minutes for an update. Finally, when we were about four kids from the front, he joined me, meeting my new friends, four-year-old Jaden and his dad.

The 45 minutes in line had given me ample time to get to know Jaden and learn his family's story. Jaden's dad had lost his job, home and family all within two weeks of each other, several months ago. He was now living with his grandparents and had taken the bus there with Jaden to see Santa. He didn't know they'd charge for pictures. He didn't know there would be a small train tantalizing Jaden, but costing $3.50/person for a 3-5 minute ride (racket!). He didn't know that after hearing that story I just had to reach in my wallet and cough up enough money for the two of them to ride the train. After all, Jaden was all excited to ask Santa for a choo-choo train for Christmas.

I didn't explain to Jaden's dad why a mother of a fifteen-year-old would be standing in line. When Rojo joined us I let Rojo speak for himself. "Do you want to see the list I am giving to Santa?" His earnest expression and obvious excitement (and belief) spoke for themselves.

"Sure," said the dad.

Rojo produced the list we'd made the day before and put in my purse so we'd be sure to have it for the big moment:

As the man handed the list back to Rojo and he moved up in line that much closer to the goal of seeing Santa, a realization fell upon me, "I was born for this." It really doesn't bother me a bit standing there, holding hands with someone taller than me now, talking about flavored shampoo and teddy bears, reindeer and Santa. I'll take it.

I would not make a good soccer mom. I am no good at cooking, entertaining, decorating, working outside the home, having a house full of kids here doing what a house full of kids do, basically all the things my friends are super good at.

Monday, December 5, 2011

10. Drove the kids to school in my pajamas and slippers when Woohoo's car wouldn't start

9. Calling a repair person to come fix the oven that sparked and made a big popping sound when I tried to turn it on. Now it won't do anything at all despite several attempts to flip the circuit breaker, because that's all I could think to do, so continued doing that long after it clearly wasn't doing anything to fix the problem

8. Taking Flicka into the vet to have her anal glands expressed

7. Putting on rubber gloves and removing 100 layers of grease and grime from our oven fan, because when I was checking out possible causes of the spark and pop, I discovered it had been quite some time since I got in there and scrubbed

6. Changing beds

5. Vacuuming dog hair

4. Looking for all the missing dishes in Woohoo's room - wish me luck

3. Wrapping gifts, gifts and more gifts

2. Turning everyone's clothes right side out before washing them - apparently this is really, really hard to do and I'm the only one in the family that has learned the secret

1. May "save" cleaning the toilets so I have something to look forward to tomorrow

Friday, December 2, 2011

Went into Rojo's room two nights ago and there on his mini-trampoline, lying face down, was a framed picture of him at age two. Actually it's one of those frames with places for three pictures, and it captures him in rapid succession being all two - darling. Not a lot to love about him at that age, but I have always loved those three shots, because they remind me that although my memory tells me he was nothing but a pain-in-the-ass, he did have his moments. Three of them are captured for all eternity.

When I asked Rojo why he took the frame off the wall, he just said, "I didn't want it up there anymore." I took it down to live in the basement with all the other things we have framed and don't want on the walls anymore.

Yesterday I walked into his room and all but two of the framed pictures of himself that have been on his dresser for years, were turned towards the wall. The two that remained facing forward, was a darling picture of his godparents, Tom and Nancy, and a Bible verse my mom gave him when he got baptized in April. The ones now facing the wall were all of him as a baby or toddler. I turned them around again, just to see what he'd do. Sure enough, went in his room this morning and those same ones were turned towards the wall again.

I asked him, "Why do you keep turning the pictures of you around?"

"I'm sick to death of them," he said.

In all these years he's never said boo about what he wants his room to look like, what he wants on the walls, what kind of comforter cover he wants, what color the walls should be, the arrangement of the furniture, nothing. It's as though he's now looking around his space with different eyes, teenage eyes, growing up eyes, moving on eyes. And with tears in mine, I took all the smaller pictures down to the basement, too, and closed that door.